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Tag Archives: ARPKD
Among My People
Last Friday I traveled to New York and carried my bag off the plane to load them up in the car of a friend who lives there. Michele, co-coordinates the chapter that serves the ARPKD/CHF and Pediatric ADPKD population through the … Continue reading
Healing through music.
A couple of years ago I heard about a baby who had been born with ARPKD, as I often do when someone calls the PKD Foundation. His name was Myles. I didn’t speak to or know anything about the family … Continue reading
Posted in Kidneys in general, Story telling, What others take for granted
Tagged ARPKD, Lullabies, music, PKD Foundation, Sara Mann, Tears in Heaven
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She is brave.
Written by Quinnlin, February 2013 ————- I am brave because of my swimming tryouts, haunted houses, and my kidney transplant. I will tell you things about them. My swimming tryouts were scary because I couldn’t do a flip turn. I … Continue reading
Friday Photo Fun
I love this picture of President/CEO Gary Godsey of the PKD Foundation at the Board of Trustees meeting this weekend in Atlanta. He was animated, talking about something strategic and he’s serious. We’re so unbelievably lucky to have him leading … Continue reading
Posted in Story telling
Tagged ARPKD, kidney transplants, living with ARPKD, PKD Foundation
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It was innocent enough.
My BFF Carol comes over nearly every Friday night. Sometime during the day we text about who has what in their fridge and we figure out the menu. By menu I mean anything around steaks, because these Friday night rituals … Continue reading
Posted in NaBloPoMo - A post a day!, Raising special needs kids, Story telling
Tagged ADPKD, ARPKD, arpkd/chf, kidney transplant, liver transplant, PKD
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The mother and person I became. Day 5
A few minutes after Gage was born I held him in my arms I looked up at my beloved and didn’t have the words to express what I was feeling. Gage made me a mother. It was a year … Continue reading
Why the Walk for PKD?
Quinnlin says it best. We’ve been involved with the PKD Foundation for over 10 years. For years I was the Walk and Chapter Coordinator in Atlanta but a new, terrific group of people have taken over. I am still working … Continue reading
Kidney Function Rules the World (or at least vacation).
This morning we woke up like any other first full day at the beach and made breakfast and set out to bike ride, buy flip flops (yeah, I forgot them) and swim in the pool at our luxury 1950 cinderblock … Continue reading
365 Days of Kidneys, Days 111-141
So, I’ve been gone for 30 Days of Kidneys, which is ironic since we’ve been busy taking care of kidneys. And teeth. And general health. As is the summer time around here, we squish all of our check ups for … Continue reading
When “normal” kicks back.
See that picture? It’s a (presumed) bug bite on Quinnlin’s leg. Yes, it has a circle drawn around it in ink pen. Doesn’t everyone do that when their kid gets a bug bite? Yeah. No. They do not. When I … Continue reading
